The Importance of Newborn Screening in SMA [VIDEO]

A few weeks ago, my brother took me for a ride in his convertible. Being lifted in and out was honestly kind of terrifying, but the ride was quite nice.

I’ll be joining at least the one on Monday night. Looking forward to seeing some familiar faces, and meeting some new people!

They definitely seem like something that would be worth trying. I can’t use them because of my trach, but you’ll have to let me know what you think if you try it.

Alyssa, that’s nothing! One time  mine broke down at the bottom of a very large hill while on vacation. My family had to take turns pushing it back up the hill to the hotel.

I’ve never used one, but have you ever seen those round neck float things? They seem pretty popular. It would keep your head above water and allow to put the rest of your body in the water.

When it breaks down while simply driving across the living room. I started having that problem towards the end with my last chair. Fortunately, I already had a new ordered and on the way. It was becoming a serious problem that made leaving the house hazardous. I never knew when it was going to suddenly die. I can also understand putting it off. I…[Read more]

Since I don’t take Spinraza, it’s an easy decision for me. I intend to start taking Risdiplam as soon as possible. But I can see why this poses a dilemma for you. What you’re doing works for you, but it’s hard not to wonder if something else might be better. It certainly wouldn’t hurt to wait and see how effective Risdiplam is for other adults -…[Read more]

Pets are definitely a popular topic this week! Rey is adorable and I think you’re doing an amazing job caring for her! She is well loved!

Too much screen time definitely has a negative impact on me. Like you, I’m definitely spending more time on my devices now that I’m at home so much. But this week I’ve decided to commit to spending less time on social media, at least for a while. The events of the past few months and weeks has caused my feed to be filled with a lot of hate and b…[Read more]

Fantastic news for both of you! I’m sure it’ll be very beneficial. I don’t know tons about these arms, but I’m sure Kevin and Ryan would both have great tips since they’ve had theirs for quite a while.

I absolutely love working outside!

I believe we’re currently in stage 3/5 of reopening here. Unfortunately the number of cases is starting to spike again. I won’t be getting back to anything normal for a while yet. There’s not enough improvement for me to be comfortable with it.

Honestly, I often find that fresh air and sunshine the perfect solution. There’s something so restorative about being outside on a nice day. Somehow, it’s both relaxing and energizing.

I think those are just called surgical masks. I’m not sure if they make anything thinner than that.

What type of mask was it? Some are easier to breathe through than others. I just bought a reusable one, but haven’t worn it yet. The fabric is really light so I’m hoping I won’t have problems with it.

It’s certainly fine to do things that disabled friends can’t do from time to time. We understand that there are some things we just can’t do. However, if you’re planning something that you want a disabled friend to be able participate in, just ask them what they need. I don’t consider that to be calling unnecessary attention to my disabilit…[Read more]

Mystery boxes can be really fun! I haven’t tried many but just recently got one from Half Price Books. You get to choose a genre, and a staff member will pick out 5 books for you. They’re $10 unless you want them in excellent condition. I got a sci-fi box for myself and a mystery box for my grandma. It was really fun to see what they picked for…[Read more]

Working from home is not new to me, but I do hope it becomes more widely accepted. Some people work very well from home at it clearly has potential benefits for the disabled community.

I don’t know how long I’ll keep isolating for, but I won’t be rejoining the world just yet. I’m going to see how everything goes and start slowing picking some places to go once I see that things are continuing to improve. And I’ll be wearing a mask everywhere that I go. My mom found some that will cover both my face and my trach.

I totally echo Rachel’s! What I wouldn’t give to take a shower in private! Another one is the ability to do things that a lot of people don’t actually enjoy doing like housework. I would love to be able to do my own laundry. Or there are times where I look at my bedroom floor and realize that it News seems vacuumed, but I don’t want to interru…[Read more]